Family Matters Meet Siblings Who Double As Caregivers

connecting with MDA families and friends

QUEST.MDA.ORG | FALL 2015

FAMILY MATTERS MEET SIBLINGS WHO DOUBLE AS CAREGIVERS

ON THE JOB FINDING FULFILLMENT AND INDEPENDENCE IN A CAREER

forward BY STEVEN M. DERKS, MDA PRESIDENT AND CEO The Heart of Our Mission The Muscular Dystrophy Association is the world’s EACH DAY ACROSS AMERICA, the children and adults we serve and represent demon- leading nonprofit health strate inspiring can-do spirit and strength, often defying remarkable odds through their agency dedicated to saving and actions — from unforgettable events like walking a daughter down the aisle, skydiving or hiking the Grand Canyon, to everyday moments like starting kindergarten, going to college improving the lives of people or sharing a laugh with a loved one. with muscular dystrophy, ALS MDA families are — and always have been — at the heart of MDA’s lifesaving mission. We (amyotrophic lateral sclerosis) were started by families, for families, and we are 100 percent dedicated to freeing families and other life-threatening from the harmful effects of muscle-debilitating diseases. Along the way, we work hard to neuromuscular diseases. It does help families have more of these unforgettable and everyday moments with fewer barriers. so by funding worldwide research With the families we serve in the forefront, I am encouraged by the partnership and to find treatments and cures; by collaboration of the neuromuscular disease community to achieve providing comprehensive health progress. We know it will take all of us working together to achieve care services and support to our shared mission. In turn, MDA has been working to expand its MDA families nationwide; and by collaborative relationships with researchers, clinicians, and both rallying communities to fight back nonprofit and for-profit partners. We are excited to be involved through advocacy, fundraising in new partnerships with CureDuchenne, the Friedreich’s Ataxia and local engagement. Research Alliance and numerous ALS groups, and we continue to move ahead and make progress through ongoing partnerships with the American Association of Neuromuscular & Electrodiagnostic Medicine and Genzyme. These relationships will enable us to align resources and focus efforts for faster impact. For advertising opportunities: Maureen Tuncer Certainly, we have an urgent focus to accelerate treatments and cures. Since our last issue Advertising Sales Manager of Quest, MDA has awarded $10 million in new research grants to the best and brightest [email protected] researchers across the globe. These new grants are supporting studies seeking to advance For editorial queries: our understanding and discovery across the full spectrum of neuromuscular diseases. Ther- Alyssa Quintero Marketing Communications apy development is getting a greater percentage of these grants, given the great progress [email protected] that has occurred in that field during many decades of past MDA basic science investments. We are seeing exciting, promising advances and continue to develop new ways to provide the best care to kids and adults fighting these devastating diseases, including: Published quarterly by n Muscular Dystrophy Association Expanding clinical trials through enhanced partnerships with medical institutions and 3300 E. Sunrise Drive Tucson, AZ 85718-3299 | (520) 529-2000 drug developers. email: [email protected] n Using new channels to connect families and caregivers to more and better resources. Available on the Internet at quest.mda.org ISSN 1087-1578 n Refreshing the MDA brand, including rolling out a new MDA website with advanced capa- Postage paid at Bolingbrook, IL Nonprofit postal permit number 840. bilities early next year. n Establishing a new corporate engagement and recognition program to give our generous Postmaster: Treat as Standard A Mail Only © 2015, Muscular Dystrophy Association. All rights reserved. partners enhanced avenues through which to support families and fuel progress. MDA and QUEST are registered trademarks of the Muscular As you’ll see in the subsequent pages and at MDA.org, our families’ compelling stories of Dystrophy Association. The acceptance of advertising in this magazine does not strength, determination and resilience inspire us and help raise awareness for the diseases constitute or imply endorsement by MDA of any product or service. MDA accepts no responsibility for any claims made we fight. With the holidays and family gatherings fast approaching, I want to thank all of you in any advertisement. Quest reserves the right to refuse to accept any advertisement. For advertising information, call who proudly support MDA’s lifesaving mission. Your continued support helps translate this (866) 775-8568. hope into strength that is yielding answers. Information contained in Quest may not be reproduced, published, transmitted or distributed in whole or in part without prior written consent of MDA. Always consult your professional advisers as to how medical, legal or financial information inQuest pertains to you. MDA assumes no liability for any information in Quest.

FOLLOW MDA ON Steven M. Derks President and CEO PUBLICATION MANAGEMENT Muscular Dystrophy Association

847-205-3000 | GLCDELIVERS.COM QUEST.MDA.ORG / QUEST 1 contents FALL 2015 COVER STORY 28 52 MY BROTHER’S (OR SISTER’S) KEEPER The unique dynamic — its blessings and occasional hurdles — of one sibling caring DEPARTMENTS for another with neuromuscular disease. 04 STRENGTH IN NUMBERS Compelling stats from the history of Fill the Boot and its current 2015 campaign. 06 PROGRESS NOW The latest news on medical research, promising scientific advances and clinical trials for

COVER PHOTO BY ROB GOULDING MDA diseases. FEATURES THRIVE 365 18 Tips for minimizing holiday 20 ALL IN A DAY’S WORK stress and maximizing the spirit 20 For many individuals with of the season. neuromuscular diseases, finding a meaningful career can make for a 38 HOT PURSUIT richer, more independent life. Products and tips to improve your sleep and increase energy. 34 FOLLOW THE BIOMARKERS 40 ACCESS MDA How identifying the body’s key A fraternity’s MDA connection, signs and measurements spurs Muscle Walk and Team lifesaving progress in research, Momentum stories, climbing clinical trials and therapy Mt. Kilimanjaro and more. development. 50 FROM WHERE I SIT A train ride helps Jacqueline Johnson overcome fear and find a world of possibilities. 52 LASTING IMPRESSION web exclusives Ten-year-old Axel Vazquez- Solis’s first time at MDA Changing Directions Summer Camp is one he’ll Writer Chris Anselmo, who lives with Miyoshi myopathy, finds a new job for the never forget. summer in a new city and learns the value of embracing the unexpected. Born with a Superpower Writer Sarah Manuel, who lives with type 2 spinal muscular atrophy, finds strength in herself because of her disability, not despite it.

Click on the Quest cover at quest.mda.org to read these and other stories.

MDA-010 In my life I have gone through many changes looking down on me. Each having Duchenne muscular dystrophy, some day my life gets better and good and some bad. One of the best changes better! I think the measure of a person’s success is getting my new iLevel chair! I love to go to is if you are happy with yourself and your life. I sporting events, and now when I’m at eye level, have always been happy with myself and my I feel a part of the crowd instead of the crowd iLevel makes me happier with my life!

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/quantumrehab @quantum_rehab strength in numbers MEASURING PROGRESS IN THE FIGHT AGAINST NEUROMUSCULAR DISEASE

Number of fire fighters participating in FTB in 2015 (includes union-IAFF and nonunion fire fighters)

Years of Number the MDA- of states Fill the IAFF represented Boot partnership with FTB In their jobs, fire fighters save lives every day. But they also personify strength and courage off the clock. $558 million Consider the Fill the Boot (FTB) Total money raised since campaign, the long-standing fund- the partnership began raising partnership between MDA and the International Association of Fire Fighters (IAFF). Each year,

members line street corners to Number of FTB events expected to take place in 2015 collect money — in their boots — from neighbors and passersby. Just “With MDA, the + as past donations have translated For more on Fill the Boot IAFF’s support is and MDA’s relationship into life-changing research and with IAFF, visit mda.org/ not going to come sponsor/international- support for MDA families, so too association-fire-fighters to an end until and read “Giving Muscle are today’s FTB collections fueling Disease the Boot” in the the need for MDA Quest archives at quest. future progress in the fight against mda.org. To get involved doesn’t exist.” in future FTB events, muscular dystrophy, ALS and contact your local MDA —Harold A. Schaitberger, IAFF General office at (800) 572-1717. related life-threatening diseases. President

4 QUEST / FALL 2015 Inspired by Extraordinary Patients Marathon Pharmaceuticals was founded to develop treatments for people living with rare neurological and movement disorders.

Marathon is working to gain FDA approval for a potential treatment for patients with Duchenne muscular dystrophy.

We are proud to partner with patients, caregivers and advocacy groups as we work to develop treatment options for patients who need them.

To learn about Marathon Pharmaceuticals, LLC, visit: www.marathonpharma.com

Image does not represent an actual patient DMD-15-005 progress now RESEARCH AND CLINICAL TRIAL UPDATES

Toward Treatments and Cures New grants pave the way to progress

As part of an effort to refocus its research grants program, MDA animal models bearing the mutation that causes the disease. began funding 36 new research and development grants, totaling ■ Scientists at the University of Oklahoma Health Sciences Cen- nearly $10 million, on Aug. 1, 2015. The awards were made ter will work to find the optimal HDAC inhibitor (and dose) for to researchers seeking to increase understanding of and find increasing production of the frataxin protein, which is deficient promising treatments and cures for muscular dystrophy, ALS and in Friedreich’s ataxia (FA) and, in parallel, test an alterna- related neuromuscular diseases that limit strength and mobility. tive HDAC inhibitor that may prove more effective than others Making up the summer 2015 grant cycle, the awards reflect tested to date. an increase in spending within MDA’s research program and ■ Scientists at Columbia University in New York will study the underscore MDA’s commitment to investing in research across underlying mechanisms that drive a recently discovered form diseases — with the expectation that increased understanding in of congenital muscular dystrophy (CMD) and test three one disease area will inform progress and lead to research and possible treatment paradigms. medical breakthroughs in other disease spaces. ■ Scientists at Johns Hopkins University Read more MDA’s Medical and Scientific Advisory Committees, compris- School of Medicine in Baltimore will test about MDA + grants at ing some 40 of the world’s leading clinicians and scientists who a gene therapy strategy to increase mda.org/gaag. serve in these volunteer roles for MDA, recommended the top SMN protein levels in spinal grants out of 350 applications to MDA’s Board of Directors. Board muscular atrophy (SMA). This project approvals were made in July. is co-funded by the American Association of Neuromuscular Among the research projects funded by the new grants: & Electrodiagnostic Medicine (AANEM), as MDA and AANEM ■ Scientists at the University of Kentucky in Lexington will study a continue to build on a partnership aimed at providing neuro- new drug target for ALS and test a potential therapy. muscular disease education and supporting research related to ■ Scientists at Biosciences Institute, University of São Paulo muscle and nerve disorders. (Brazil), will study how a protein called Jagged1 prevents the The new grants complement a wide range of ongoing neuro- symptoms of Duchenne muscular dystrophy (DMD) in muscular disease research MDA is supporting worldwide.

ALS (amyotrophic lateral sclerosis)

Q on the Move Astrocyte (a type of FDA clears way for clinical trial to test ALS cellular therapy glial cell)

Q Therapeutics announced in June that the U.S. Food and Drug Admin- istration (FDA) has cleared its Investigational New Drug Application (IND) for the initiation of phase 1-2a clinical trials of its experimental cellular therapy, Q-Cells, in people with ALS (amyotrophic lateral sclerosis). Q-Cells are human glial-restricted progenitor cells (GRPs) that give rise to two types of specialized glial cells — astrocytes and oligodendro-

cytes — which are critical for normal motor neuron function. Neuron The trial, which is set to begin in October, will test the safety, tolera- bility and early efficacy of Q-Cells transplantation in 12 participants with Simplified view of a neuron Oligodendrocyte ALS. The trial is not yet open for enrollment. and glial cells (a type of glial cell) The FDA has previously granted Q-Cells orphan drug status — a designation intended to advance the evaluation and development For more about Q Therapeutics’ development of + Q-Cells to treat ALS, visit qthera.com. To find out of therapeutics that demonstrate promise for the treatment of rare more about this trial, search for “NCT02478450” diseases — for ALS. at ClinicalTrials.gov.

6 QUEST / FALL 2015 Duchenne muscular dystrophy (DMD) MOVING FORWARD Corticosteroid treatment deflazacort advances toward approval in the U.S.

Marathon Pharmaceuticals has begun the New Drug Application (NDA) process for deflazacort as a treatment forDuchenne muscular dystrophy (DMD). Deflazacort, a corticosteroid, works as an anti-inflammatory and immunosuppressant. It has been shown to slow the loss of muscle strength and function, preserve cardiac and respiratory function, and reduce the incidence of scoliosis (curvature of the spine) in people with DMD. Importantly, the unwanted side effects often experienced with corticosteroids, such as weight gain, loss of bone mass, glucose intolerance (diabetes) and behavioral issues, may be less severe with deflazacort as compared to other steroids. Marathon expects to submit the NDA to the FDA in the first quarter of 2016. If the application is approved, the company could make the drug commercially available in the United States in the first quarter of 2017.

To learn more about deflazacort in DMD, read “Charting a + Corticosteroid Course: The Benefits and Side Effects of Prednisone and Deflazacort” at quest.mda.org.

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Duchenne muscular dystrophy (DMD)

TREATMENTS ON Trial Seeks Participants THE HORIZON CAT-1004 to be tested in boys with DMD, ages 4 to 7 Two exon-skipping drugs to treat DMD in a subset of A phase 1-2 clinical trial called MoveDMD boys diagnosed is poised is open for recruitment at Shriners Hospi- to enter U.S. market tals for Children in Portland, Ore., and the University of Florida in Gainesville, Fla., BioMarin announced June 29 that with a third site expected to open soon the FDA has accepted its New Drug in Philadelphia. Application (NDA) for drisapersen, The two-part trial will test the exper- and Sarepta announced Aug. 25 imental therapy CAT-1004 in boys with that the FDA has accepted its NDA DMD ages 4 to 7 years old. Investigators submission for eteplirsen. Both are looking for a total of 18 boys to partic- “exon-skipping” drugs target exon ipate in the first part of the trial, which will 51, and may help up to 13 percent examine how the drug moves through the of DMD patients. Exon skipping is a body and collect data on physical func- treatment strategy in which sections tion and muscle strength of the lower and of genetic code are “skipped,” allow- upper legs to help understand potential ing the creation of partially functional benefits of the drug in DMD. dystrophin, the muscle protein CAT-1004, in development by missing in DMD. Exon skipping is not Catabasis Pharmaceuticals, is an anti- a cure for DMD, but it could lessen inflammatory compound that is designed the severity of muscle weakness and to act similarly to corticosteroid medications (like prednisone and prednisolone) but with atrophy that are the hallmark of this fewer unwanted side effects. Preclinical data suggest that CAT-1004 may reduce muscle disease. Both companies hope to damage, stress and inflammation. have an FDA decision by early 2016. Boys who participate in the first part of the trial and who meet study criteria will be asked to participate in the second part of the trial, which will further evaluate safety and For more about BioMarin’s development of drisapersen to efficacy of the experimental therapy. + treat DMD, visit BMRN.com. For more about Sarepta’s To learn more about this trial, including inclusion and exclusion criteria, search for development of eteplirsen to treat + “NCT02439216” at ClinicalTrials.gov. DMD, visit sarepta.com.

MDA has contributed more regeneration in DMD-affected STRONG PROSPECTS than $1 million toward the muscles. It does not target Early results for HT-100 in DMD are encouraging development of HT-100 as a specific mutations in the dystro- therapy for DMD, supporting phin gene, making it potentially The experimental DMD drug from this ongoing clinical trial early-stage work that informed useful for all patients with DMD. HT-100, in development by shows that boys with DMD the laboratory development of Massachusetts-based Akashi who were treated with HT-100 the drug and providing funding For more on this Therapeutics with support from demonstrated improvements for the ongoing trial as well. + trial, read “DMD: MDA, has shown encourag- in muscle strength. In addi- HT-100 is an oral com- Multicenter Trial to Test ing preliminary results in an tion, the drug continues to be pound that is intended to Drug that Fights Muscle ongoing phase 1b-2a clinical safe and well-tolerated by trial reduce inflammation and scar Scarring, Inflammation” study in boys with DMD. Data participants. tissue formation and promote at quest.mda.org.

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Duchenne muscular dystrophy (DMD) Fighting Fibrosis FG-3019 to be tested in DMD

FibroGen announced in July that it has received FDA clearance to begin clinical testing of FG-3019 in DMD. The company plans to initiate a multisite phase 2 trial in late 2015 to test the therapy in nonambulatory patients. In DMD muscle cells, an absence of the dystrophin protein required for normal muscle fiber function leads to muscle damage, inflammation, fibrosis (scarring), and progressive dysfunction and weakness. In preclinical studies, FG-3019 reduced muscle fibrosis and significantly improved muscle function. Separately, in clinical trials for another fibrotic condition, idiopathic pulmonary fibrosis, FG-3019 was shown to reverse fibrosis in

For more about a significant proportion of patients. + FibroGen’s If testing is successful, this therapy could help development of FG-3019 to treat DMD, improve the lives of people with DMD by delaying loss visit fibrogen.com. of muscle function.

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LIFT YOUR LIFE TOWARD Facioscapulohumeral muscular dystrophy INDEPENDENCE (FSHD) QUALITY OF CARE Experts publish first-ever TM evidence-based guideline for Battery-powered toilet seat lift FSHD diagnosis and care • Perfect for those with muscle weakness

• Standard or mobile models available The American Academy of Neurology • Lifts straight up; no forward push (AAN) and American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) have released a TM guideline for the diagnosis and care of people with facioscapulohumeral muscular dystrophy (FSHD), a genetic muscle disorder in which muscles of the face, shoulder blades and upper arms are among the most affected. Based on the best available scientific studies of FSHD, this is the first-ever evidence-based guideline to Endorsed by Rob Roozeboom (above), help physicians best manage the care member of MDA’s National Task Force on Public Awareness of people with FSHD. It includes key recommendations on: ■ genetic testing to confirm diagnosis; and ■ management of FSHD-associated complications, including those related to lung and breathing function, shoulder problems, hearing loss and pain. Goals for the new guideline are to Manual or battery-powered lift increase awareness that although • Rehab facility model with power cures are not currently available, height adjustment available disease management is important • No transfer required! Stand while and valuable; raise awareness of directly lifted from wheelchair the strong need for further FSHD NEW Standing program provides many physical and research; and increase awareness of psychological benefits the importance of genetic testing for accurate diagnosis. Battery-powered chair lift • From sitting to standing in Read the guideline in the home, office or other Guidelines section on aan. environment + TM com, or view a family- • Comfort and style for friendly version on the site at use anywhere aan.com/Guidelines/Home/ GetGuidelineContent/702. To learn Ask about our 30-Day return guarantee about pain management, read “Medication, Meditation and Movement” at quest.mda.org. 800-831-8580 for information and a FREE demo video www.stand-aid.com [email protected] YouTube product videos on our website progress now RESEARCH AND CLINICAL TRIAL UPDATES

Hereditary inclusion-body myopathy (HIBM)

ADVANCING ACE-ER Glucose Cytoplasm Extended release aceneuramic acid in HIBM is being tested in a phase 3 trial Defective Feedback GNE/MNK inhibition of Enzyme GNW Ultragenyx Pharmaceutical has initiated a phase 3 study of aceneuramic Sialoglycoconjugates acid extended release (Ace-ER) tablets for the treatment of GNE myopathy, also known as hereditary inclusion-body myopathy (HIBM) and Nonaka distal myopathy. The new placebo-controlled clinical study, conducted in approximately 80 participants, will assess the efficacy and safety of six grams per day of Ace-ER over 48 weeks. The primary endpoint of the study is a composite of upper extremity muscle strength as measured by handheld dynamometry (HHD). Golgi Key secondary endpoints include the GNE Myopathy-functional activity scale CMP-Sialic Acid (GNEM-FAS), a disease-specific, patient- Ace-ER is designed to replace reported outcome that measures mobility, sialic acid, which is deficient Ace-ER Neu5Ac upper-extremity function and other indicators replaces (Sialic Acid) in patients with this disease. It here of lower-extremity muscle strength. is expected that the muscles will pick up increased amounts CMP-Sialic Acid To learn more about this trial, of sialic acid from the serum and incorporate it into proteins Nucleus + including inclusion and exclusion and fats, potentially improving criteria, search for “NCT02377921” muscle strength and function Sialic Acid at ClinicalTrials.gov. over time. CTP

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DIAGNOSTIC ACCURACY Additional funding will expand access to genetic testing for LGMD

Genzyme has provided $700,000 in additional funding to continue a limb-girdle muscular dystrophy (LGMD) genetic testing program launched in March. The program, which allows MDA clinics to offer genetic testing to people experiencing muscle weakness suspected to be caused by LGMD and who do not already have a genetic diagnosis, has received an overwhelming response. This additional funding will allow more people living with LGMD, and their clinicians, to find the most accurate diagnosis and treatment paths available. Since the partnership began in March, more than 600 tests have been adminis- tered in MDA clinics across the country. LGMD is a disorder with more than 30 genetic subtypes, all of which cause weakness in the limb-girdle muscles — the muscles surrounding the shoulders and hips — and some of which are much more likely than others to involve the cardiac or respiratory muscles. This test will allow clinicians to provide accurate diagnosis and treatment. The test requires a saliva sample, which can be collected at any one of the nearly 200 MDA clinics across the country and is then sent to Emory Genetics Laboratory in Decatur, Ga. Results are returned to the clinic physician and communicated to patients and their families within two to three months. + To find an MDA clinic near you and to learn more, visit mda.org/locate. progress now RESEARCH AND CLINICAL TRIAL UPDATES

Periodic paralysis Spinal muscular atrophy (SMA) UNRESTRICTED MOVEMENT POSITIVE FDA approves first medication for hyperkalemic PROGRESS and hypokalemic periodic paralysis Gene transfer therapy chariSMA Taro Pharmaceuticals announced in August that the FDA demonstrates has approved Keveyis for the treatment of hyperkalemic encouraging results and hypokalemic periodic paralysis. Keveyis is the first medication to be approved for the treatment of this group of Biotechnology com- hereditary disorders that causes episodes of muscle weakness pany AveXis announced or paralysis. Keveyis is expected to be available for patients promising interim in late 2015, and Taro is working to make sure people results in June for its diagnosed with periodic paralysis can receive treatment as ongoing phase 1 SMA gene therapy trial in soon as possible. infants with type 1 MDA provided support for the development of Keveyis spinal muscular beginning in the early 1990s, including contributions toward atrophy (SMA). the early-stage development of the drug and funding support AveXis reported that for a phase 3 human clinical trial — all of which has helped all three infants being make this new treatment possible. treated with a low dose of the company’s To be notified when the drug becomes available, enroll SMA drug, known at keveyis.com. + as chariSMA, have surpassed the age at which untreated babies with type 1 SMA lose their battle with the disease. The three currently range in age Portable Stairclimber - Attaches to Manual Wheelchairs Or Use The Integrated Seat Model from 15 to 18 months. Works On Most Angled Stairs - Any Stair All nine infants enrolled in the trial remain alive, and none have Material - Disassembles easily - Lightweight progressed to the need for permanent ventilation (defined as Put It In Your Car Or Travel On A Plane 16 hours/day or greater use of ventilation assistance). SMA is caused by a mutation in the SMN1 gene, which results in a deficiency of SMN protein. ChariSMA contains the gene for the full-length SMN protein, encased in the shell of a type 9 adeno-associated virus (AAV9 “vector”) that serves as a “gene transfer” or “gene therapy” delivery vehicle. The phase 1 trial of intravenous SMA gene therapy is being conducted at Nationwide Children’s Hospital in Columbus, Ohio, under the direction of neurologist Jerry Mendell, a long- www.mobilitylifter.com time MDA research grantee and co-director of the MDA clinic at his institution. (MDA is not, however, funding this trial.)

For more information on chariSMA, search for + “NCT02122952” at ClinicalTrials.gov. USA

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Spinal muscular atrophy (SMA) Embracing Opportunity A multicenter phase 2 study of ISIS-SMNRx seeks participants

Biogen, in partnership with Isis Pharmaceuticals, has initiated a new phase 2 clinical trial, called EMBRACE. This multicenter phase 2 clinical study aims to test the safety and exploratory efficacy of the investigational drug ISIS-SMNRx in approximately 20 patients with infantile or childhood-onset SMA over a 14-month period. ISIS-SMNRx is being developed by Isis Pharmaceuticals in collaboration with Biogen. Developed using a gene-modifying strategy known as antisense, it targets the SMN2 gene and encourages production of the full-length SMN protein that is needed but deficient in SMA-affected cells. EMBRACE is the fourth ongoing trial testing the same drug (ISIS-SMNRx) for SMA patients. The other trials are ENDEAR, CHERISH and NURTURE. The purpose of the new trial is to capture patients who do not meet the age requirements or other criteria used in the other trials.

To learn more about how to participate in this trial, search for + “NCT02462759” at ClinicalTrials.gov.

thrive 365 HEALTH, WELLNESS AND INDEPENDENT LIVING Holiday Cheer Helpful tips to minimize end-of-year stress and maximize the spirit of the season

BY BARBARA AND JIM TWARDOWSKI, RN

AS THE AUTUMN LEAVES start to fall, the holiday sea- n Bring healthy dishes to holiday events. If cooking is a chore, son is upon us. And between the hustle and bustle of decorating, pick up a fruit or vegetable tray at the market. For people who shopping, food preparation and social gatherings, the holidays have difficulty swallowing, bring a smoothie and let the hostess can be a source of increased stress. Anyone can feel overwhelmed pour into small cups to share with other guests. this festive time of year, but for people living with neuromuscular n Load half your plate with vegetables, fruit and lean protein. diseases, managing the additional Take only a bite or two of food with creams or sauces. activities and expenses is crucial to n Alcohol inhibits your ability to make good food choices. If maintaining mental, physical and you are allowed alcohol, limit consumption — a conservative financial health. Consider the fol- serving is four ounces. Calorically, red wine is always a better lowing tips to help you plan ahead. choice than mixed drinks. n Drink plenty of water to stay hydrated and feel full. Holding Diet and food prep a glass of water also keeps your hands occupied so you aren’t If you are cooking a holiday meal, munching on the appetizers. review the recipes you intend to include weeks before they are Families and friends needed. Determine which dishes Holidays sometimes create unwanted drama. The uncle who can be made ahead of time and overindulges in the eggnog and the sisters who always fight are frozen. To prevent fatigue, pace emotionally draining on those around them. People who have yourself by cooking only one recipe chronic health conditions need to set parameters regarding visitors, per day or every other day. For whether family or friends, advises Sheilah Storch, a licensed clinical cooks who can’t lift a huge turkey social worker at the MDA Clinic at Texas Neurology in Dallas. or use a hot oven, order the meat Before the holidays, it’s a good idea to communicate with from a local restaurant or grocery your potential visitors. Schedule visits when you typically feel store, and stick to easier-to-prepare the strongest. For instance, many people with neuromuscular side dishes. diseases have more energy in the morning and tend to tire in And when in doubt, delegate tasks to family and friends. When the afternoon, Storch notes. Crowds can be overwhelming for entertaining, divide the work by throwing a potluck party. Use some individuals, especially those experiencing sensory loss or paper products instead of the fine china to make cleanup a snap. communication difficulties. Limit the number of visitors to two Don’t overexert yourself before the party even begins; ask a friend or three. If you are able to join friends and family outside your or two to arrive early to help with the preparation. home, then it is easier to exit when your stamina is waning. Holiday dishes are notoriously high in fat. “If you eat well 80 to If you are traveling to see relatives, consider staying at a hotel. 90 percent of the time and you’re not having tons of snacks and An all-suite property is typically more spacious. The added treats, then in many cases you should be allowed to go to a party square footage is worth the expense for people who are traveling and eat what you want,” says Elana Sussman, registered dietitian with bulky medical equipment. Book reservations early, as hotels at Mattel Children’s Hospital UCLA, site of an MDA clinic. But have a limited number of accessible rooms. If you are entertain- for individuals with special diets or food restrictions related to ing houseguests, set a limit to the number of days they can visit a diagnosis, consult a dietitian and care provider on specific or ask them to spend some of their visit in a hotel. options and goals, she adds. To enjoy the holidays without sabotaging your waistline, Gifts and other expenses Sussman offers these tips as well: Overspending on gifts, party outfits, decorations and all the n Don’t skip meals. Going to a holiday function starving will other activities surrounding the holidays also can cause stress. invariably lead to overeating. Planning ahead for purchases and setting a realistic budget is

18 QUEST / FALL 2015 n Save money and buy decorating supplies at the dollar store. For people who have difficulty cutting wrapping paper or A LITTLE HOLIDAY HELP manipulating tape, stock up on gift bags and tissue paper. The addition of a $1 ornament can turn a solid-colored bag into a Many people seek out volunteer opportunities during the holiday-themed package. holidays, and some high schools even require students n Handmade items are all the rage. Save money by rolling up your to fulfill service hours. Reach out to local schools and community groups, like scouting troops and religious sleeves and creating one-of-a kind gifts. Some examples, like organizations, to inquire about assistance with holiday building a bird house or painting a set of notecards, can even be baking, decorating or gift-wrapping. Or contact your made with the help of children. Look for inspiration on Pinterest. local MDA office at(800) 572-1717 (select option 2) or n Scan the newspaper for free concerts and performances. Check mda.org/locate for help finding such leads. with the Convention and Visitor Bureaus where you might travel for affordable events, parades and holiday markets. n Many local MDA offices sponsor a holiday party for families, paramount to avoiding the buyer’s remorse that accompanies an as well. inflated credit card bill. Consider these tips to get started: Above all else, don’t feel pressured to be perfect during the n Make a list of every person who will receive a gift and deter- holidays. It’s OK to scale back. Be picky about how you spend mine the total budget. Before heading to the mall, compare your time to ensure you’re rested for the events you do attend. In prices online. To avoid dealing with excess crowds and traffic, other words, during this hectic time of year, remember that it’s purchase gifts throughout the year, as items go on sale — or OK to say, “No.” shop online. So take a deep breath, relax and enjoy the season. n Instead of giving to every person, suggest that family members, perhaps adult siblings, draw a name and exchange a gift with a Barbara Twardowski has Charcot-Marie-Tooth (CMT) disease and predetermined price cap. uses a power wheelchair. Jim, her husband, is a registered nurse. n Keep it simple and make donations on friends’ behalf to a favor- The couple lives in Mandeville, La., and writes about accessible ite charity, like MDA. travel, assistive technology and related issues. MDA TRANSITIONS: WORKFORCE

FOR MANY INDIVIDUALS WITH NEUROMUSCULAR DISEASES, FINDING A MEANINGFUL CAREER CAN MAKE FOR A RICHER, MORE INDEPENDENT LIFE

all in a

20 QUEST / FALL 2015 oing from being a high school or college student to an independent, working adult can be challenging for almost anyone. But for individuals who live with neuromuscular diseases, the transition into the workforce can be especially overwhelming. But young adults in the MDA community who have successfully made this employment leap agree that the rewards of meaningful work are worth the challenges they’ve faced en route to establishing thriving careers.

BY DONNA ALBRECHT

QUEST.MDA.ORG / QUEST 21 Take Dan Dorszynski. “It feels great to be able to keep working and participating in society in the way HEALTH CARE HOW-TO most people do,” says Dorszynski, a As an independent adult, you may qualify for continued coverage computer programmer and entre- under your parents’ insurance plan; Medicaid (exact qualifica- preneur who received a diagnosis of tions and benefits vary by state); the Affordable Care Act (ACA); or Becker muscular dystrophy (BMD) through your employer’s plan. For example, Dan Dorszynski says, “I’m really happy the Affordable Care Act passed, because it when he was 13 years old. “Although allowed me to buy my own insurance as a self-employed person I have days where I feel like my plate with a pre-existing condition.” Katrina Gossett and Dan Sedgeman is overloaded, I know that having on the other hand, have health insurance through their employers. work in front of me is better than Kristin Stephenson, MDA vice president of Policy & Advocacy, not having anything offers these notes and tips to help you evaluate the best health plan for you: to do. Plus, I like what n Medicaid is different in every state, and there are wide variations I do, so it’s fun and among policies and coverage details. challenging.” n Similarly, health insurance is not a one-size-fits-all proposition — Here, Dorszynski determining the right coverage option requires taking a deep dive and others in the MDA into the fine print of a policy. For example, if you move from one community share sto- plan to another, will your current providers still be covered as “in-network”? And what is the network? Who is part of it? ries and tips from their own career journeys Other questions to consider: thus far. n Co-pays: What’s included? Doctor/medical appointments, medications, etc. The job hunt n Deductibles: How much per use? Is there a cap? n Preauthorization requirements: Does the plan require a According to Amanda gatekeeper (like many HMO plans) or can a patient self-refer to Papp, MDA’s health a specialist? care service coordi- n Cost calculations: How do your known costs (or most likely nator in Columbus, costs based on experience) compare to the annual out-of-pocket Ohio, who works with maximums? many young adults n Coverage considerations: What’s included in terms of durable medical equipment, physical therapy (PT), occupational therapy as they explore their future, the path “Independence (OT), vision, dental, etc.? does not mean of pursuing and landing a job and being able succeeding in a work environment is by no means out of reach for young a great way for individuals to test the recruiting. It’s a lesson shared by to do every adults with neuromuscular disease. In waters in a certain field or role, and Katrina Gossett, as well. single task. It fact, she says, in some respects such find where their skills and passions Gossett, who lives with spinal means being individuals are well-suited for this align — or don’t. muscular atrophy (SMA), knew she able to direct challenge because they’ve always had “My first job was from a word- wanted to move closer to family in to test their limits to get as far as they of-mouth lead,” says Dorszynski. “I Indiana when she graduated from the how things have in life. interviewed for an intern position I University of Chicago Law School. are done. A “A sense of hope is present because heard about from a friend’s mom and So during her years in Chicago, she big aspect of many of these young adults are ready got it.” Then, after he graduated from made a special effort to make contacts independence to tackle that challenge and take on Stanford with a B.S. in civil and envi- with individuals working at law firms is directing the world,” Papp emphasizes. ronmental engineering in 1997, that back in Indianapolis. That network- That sense of hope, and youthful internship “led to a regular full-time ing groundwork helped Gossett land your own idealism and enthusiasm, is especially job at the same place,” he adds. consecutive summer internships at life through potent in high school and college Although this was just the first Indianapolis’ Faegre Baker Dan- education students. Perhaps that’s part of the stop in a career that has since taken iels LLP. Like Dorszynski, she then and then reason why Papp and others suggest him into a new and unexpected field, graduated with a job offer in hand, that the best time to begin looking for Dorszynski’s story is an example of and today, Gossett is living her dream employment.” a full-time job is when one is still in the importance of networking when as an associate in the firm’s business — Katrina Gossett school. Internships in particular are it comes to job search and career litigation group.

22 QUEST / FALL 2015 Support MDA Research through Muscle Walk Thanks to our supporters, MDA awarded $10 million to 36 new research projects this fall aimed at finding urgently needed treatments and cures for muscular dystrophy, ALS and related muscle-debilitating diseases. We know our families need breakthroughs now — that’s why we’re fighting every day to accelerate progress. We anticipate more new treatments in development during the next five years than in the previous five decades combined. You can help make this possible by supporting one of the 30 Muscle Walk events scheduled this fall near you.

Visit mdamusclewalk.org to sign up.

Thank you, national MDA Muscle Walk partners!

mda.org Muscular Dystrophy Association Embrace change, find balance Today, Dorszynski works as + Between company mergers and a Web developer and program- Back to acquisitions, downsizing, relocations, mer and runs a computer-based School and promotions, change has become company with a friend. This article is part a regular part of how we work in this Adapting a career path to two of a two-part day and age. Of course, voluntary the realities of a diagnosis is series on MDA Transitions. The first change — taking a new job or jumping something that Dan Sedgeman article, “A Bright into an entirely new role or field — is knows well. With a B.S. in phys- Future,” focused on equally common. All of which is ical education from Southwest how young adults to say that even though modern Minnesota State University and with neuromuscular diseases have work life is not always smooth, with a master’s in clinical exercise found success and patience and persistence, you can physiology/cardiac rehabilitation I thought a steppingstone to build a career. from Minnesota State University, “I picked a major independence in was interesting, and it college. Find it in Sometimes, it’s just not the one you Mankato, Sedgeman wanted to the Quest archives originally planned. become a certified personal trainer — gave me the opportunity to at quest.mda.org. After Dan Dorszynski’s post-college even if he knew that path might not study muscles and muscle internship, he felt driven to continue be possible. fibers.” along a logical career trajectory, moving “Because I have Duchenne mus- on to graduate school, which he did, cular dystrophy (DMD), I didn’t — Dan Sedgeman before finding a niche working in civil think I’d be working after college,” he engineering. But during that process, admits. “I picked a major I thought professional expertise into a per- he discovered computer program- was interesting, and it gave me the sonal passion project: Expressive ming, and that changed everything. In opportunity to study muscles and Movements. This integrated dance programming, Dorszynski discovered muscle fibers.” program, open to those with and not just a growing, in-demand field that As expected, Sedgeman’s DMD without disabilities, blends fitness, appealed to him intellectually; he also eventually made him too weak to phys- therapeutic benefits and social inter- found a profession that he feels is far ically train clients. But he remained action. (Find out more at vsamn.org/ more compatible with the progression passionate about fitness, so he slightly expressive-movements-new- of his BMD. reframed his outlook, as well as his integrated-dance-program.) “Once I changed paths and started career goals. Now, he works as a health For Sedgeman, who also regularly programming, I was less concerned coach, helping novices establish fit- plays power hockey, an adaptation of [about being able to find and per- ness programs by reviewing screening the game in which participants use form work effectively] because the results for their health programs, as power wheelchairs, these recreational job is 95 percent being in front of a well as counseling them on developing pursuits have provided a great way computer. So whether I was walking their health and fitness goals. to indulge the specific passions he or using a wheelchair, I could still do Sedgeman has also found time wasn’t able to focus on in his career. it,” he says. to translate his academic and Plus, he says, it helps make him more well-rounded and have better work- life balance. RESOURCES + MILESTONES Similarly, Dorszynski leverages the fact that he’s self-employed to carve October is National Disability Employment Awareness Month out time for his other passions, like (NDEAM). This year, NDEAM celebrates its 70th anniversary. To find wheelchair tennis and travel. related disability employment resources, learn about the history of NDEAM and see how you can support its cause, visit dol.gov/ In her case, Gossett adds balance odep/topics/ndeam. to her working life as an attorney This year also marks the 25th anniversary of the Americans with by competing in ComedySportz, an Disabilities Act (ADA). To learn more about the ADA and its impact, improv comedy show/competition visit MDA’s ADA Information Center at cqrcengage.com/mda/ that has programs in many major ADAinfo and read an ADA-related Q&A with MDA Vice President cities. Before she found the law as a of Policy and Advocacy Kristen Stephenson at quest.mda.org/ article/ada-25th-anniversary. calling, Gossett was a theater major in college. So even though improv is by

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When it comes to getting information about some the University of Kansas. After grad the workforce often accompanies aspect of life you’re about to embark on, there’s nothing better than learning from the experiences of school, he started doing statistical a larger transition from youth and those who have already been there and succeeded. analysis work, but he wasn’t building dependence to adulthood and inde- The MDA Transitions Center includes a blog written the life he wanted. On a whim, he pendence. Both types of transitions by other young adults who have successfully started a personal Web page and blog are a process that are unique to each overcome many challenges associated with life with (ScottDrotar.com) and began writing individual. For Scott Drotar, the pro- neuromuscular disease. Among the bloggers are some of the individuals mentioned in this article: about his life. Before he knew it, he cess of transitioning to independent Dan Dorszynski, Scott Drotar and Katrina Gossett. had a growing following and invita- living was intentionally gradual, and The Transitions Center also has a “Career Center” tions to speak to groups and earn a college marked a pivotal point along page with links to useful job search and career living by sharing his story. the way. resources. To check out the Center’s offerings, read Drotar has embraced this new path “It was great that I was able to grad- a blog or submit your own story, visit transitions. as well as the flexibility it affords him. ually ease in to being a completely mda.org today. Now, living in Kansas City, Kan., he independent adult, and I am not sure has created a work schedule based on I would have been this successful if I its nature spontaneous, not scripted, his personal needs, instead of those of had jumped straight to living on my she says these classes have helped her an employer. While he still supple- own,” he says. “By first living in the “feed the theater bug” that still resides ments work related to his website dorms and learning how to function inside her. While Gossett admits she with statistical analysis projects on a as a disabled adult in an able-bodied was initially terrified and thought she freelance basis, his work day invari- world, while still having the added couldn’t be funny consistently, she has ably begins about 1 p.m. support of the college setting, I was come to thoroughly enjoy the classes — “With my medications and such, able to develop some of the necessary and even acknowledges that studying my body is more cooperative at that skills to live independently.” improv has benefited her in her day job. time,” he says. “I usually spend the Just like the journey one goes on to “I would have loved to be an actress afternoon doing bookkeeping for my find a meaningful career, becoming professionally,” she explains. “I knew speaking business. Workplace stuff an independent adult is not always it was a very hard career to get into is important, but not the stuff I enjoy easy, but in the end, the rewards and hard to support myself. But I was doing. When that’s done, I write new of doing so are worthwhile. So it’s a lawyer in mock trial in high school blog posts, a new talk or work for one important to keep that perspective and enjoyed the trial drama. There’s a of my statistical analysis clients.” in mind and remember that some- little bit of theater in the law, at least Drotar stresses that finding a times what holds a person back isn’t when you’re in the courtroom.” schedule that best balances health their actual limitations, physical or and wellness with what’s satisfying otherwise; it’s their own natural fear Blaze your own trail about a given job, while factoring in of what lies ahead or even the fears Even if you’re able to establish a income needs and financial consider- of loved ones who don’t want to see healthy work-life balance, not everyone ations, is key. them get hurt. is interested in becoming an employee “It took me a while to know how “Once you set your goal,” says Dro- in the traditional sense. One reason to budget my finances for ups and tar, “don’t let others — parents, siblings, could be that such a person has an downs and to structure my time,” he friends, caregivers — tell you what they entrepreneurial spirit and loves the says. “I am in charge of when I work believe you can do. Everyone in my life freedom to follow his or her own muse. and how much. If I have a day when told me, “You’ll never live on a campus Another could be that this person my body is not working well, I can in North Dakota,” but I refused to has a neuromuscular disease that work less and not worry about upset- listen. I decided I’ve got this one life. limits strength and stamina, making a ting a boss. I can take Tuesday and It’s mine to live. It’s going to be shorter standard eight-hour work day difficult Wednesday off to feel better and work than most, so I’ve got to make the most or impossible. As it happens, in some more hours on Thursday and Friday of the time I’ve got. Even if I fail, I’m cases it’s a combination of the two. to get the work done, but not have to back where I started. Live your life for Scott Drotar was diagnosed with pay for it with my body.” you — not everybody else. Dream big SMA at 18 months old. He earned a and go for it.” mathematics degree at the Univer- Finding your independence sity of Notre Dame and a master’s For those living with a neuromus- Donna Albrecht is a freelance writer in quantitative psychology from cular disease, the transition into and speaker in Northern California.

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Quest.indd 1 9/10/15 10:43 AM Sarah Coglianese (left), who lives with ALS, receives caregiver support from her sister, Liz, who lives around the corner.

28 QUEST / FALL 2015 MY BROTHER’S

KEEPER EXPLORING THE UNIQUE DYNAMIC — ITS BLESSINGS AND OCCASIONAL HURDLES — OF ONE SIBLING CARING FOR ANOTHER WITH NEUROMUSCULAR DISEASE BY DONNA SHRYER

a small Detroit apartment, Sam Barash, 32, lives with and cares for his 20-year-old, soon-to-be 21, sister, Angela Barash, who is living with myotonic muscular dystrophy and myasthenia gravis. For a year now, Sam’s been his sister’s primary caregiver, waking her every four hours for medication, fixing her meals, helping her get dressed and doing everything possible to make Angela comfortable. It wasn’t Sam’s original plan — but as he puts it, “Things happen.” By that, among other things Sam is referring to the loss of his mother to cancer in 2014. Before passing, Mrs. Barash asked Sam to always be there for his sister. “I said, ‘yes,” Sam recalls. “I knew I’d have to give up a lot — like my 60-hour-a week job and a pretty active social life — but when I agreed, it came so naturally. I even surprised myself at how much I want to be here for my sister.” PHOTO BY ROB GOULDING

QUEST.MDA.ORG / QUEST 29 Up for the challenge challenges, but overall she recognizes Sam Barash’s life-altering decision is that caring for her sister stimulated an increasingly common topic among her own emotional growth. American families with an adult child “Caring for Sharon has taught with a disability. me to live in the moment,” Ruhle “Caring for a Sibling with a explains. “With ALS, there could be Disability,” a study conducted by 10 more years of tomorrows or maybe the market research firm Ipsos, only two years. So you can’t say, ‘Let’s represents a small but telling survey do this in three months.’ You have to of adults who do not experience live for today. This perspective has a disability but have a brother or helped me find so much joy in life — sister who does. Of those surveyed, instead of focusing on loss.” 24 percent currently serve as the primary caregiver for their brother Blessings and hurdles Angela Barash says she’s able to best or sister with a disability, and one in express herself with her brother, Sam, who Living in the moment, Ruhle insists, three plan to eventually become the serves as her primary caregiver. doesn’t require exhaustive plan- primary caregiver for their sibling ning. Sometimes the most precious with a disability. patience, understanding, compassion moments just come. Like Barash, those surveyed see the and providing perspective. “Sharon brings the family responsibility as a positive move, with Cheryl Ruhle, 54, recently became together — that’s such a blessing. And a resounding 83 percent feeling “com- the full-time caregiver for her iden- we’re a loud, happy Italian family, so fortable” taking over as their sibling’s tical twin sister, Sharon Corosanite, when we get together, fun follows,” caregiver and a strong 60 percent who received a diagnosis of ALS Ruhle says, with a smile in her voice feeling “emotionally prepared.” (amyotrophic lateral sclerosis). as she names the crew. In addition to Such positive responses may Together, the sisters live in a small Cheryl and Sharon, there’s Elizabeth overlap with certain additional survey one-bedroom central New Jersey (Libby) Hertkorn, Kelly Henry and findings, including the fact that six in apartment, sleeping in the same bed- Charles Henry. The siblings care 10 respondents feel that caring for a room, just as they did as children. for Sharon at various levels, each sibling positively impacts their qual- Ruhle admits that every day is taking on what he or she can handle, ity of life — helping them to develop different, and many days bring new although the family unit is always up for a playful gathering. “A family picnic or dinner together aren’t huge events, but they make A HELPING HAND Sharon smile,” Ruhle continues. To help caregivers embrace the joys and jump the hurdles when “Someday her smile won’t be there, it comes to caring for a loved one, MDA provides a rich pool of but for today — when we can watch resources, including caregiver-related support groups across the Sharon’s face light up — it’s a bless- county. Another valuable resource is MDA’s online caregiver section, ing. It’s such a beautiful smile.” which provides helpful information and resources to help support For sisters Cheryl and Sharon, when family caregivers. Learn more at mda.org/caregivers. To find a local MDA office and other resources in your area, visitmda.org/locate . there’s a smile, laughter is always close Additional organizations and programs to consult for caregiver behind. “Caring for my sister has given support and services include: me a new appreciation for laughter,” n Administration on Aging National Family Caregiver Support Ruhle says. “It’s the best medicine! Not Program just for Sharon, but for me, too!” n Caring Connections While Barash and Ruhle find that n Share the Care n Sibling Support Project (Program core is Sibshops, which caring for their respective sibling celebrates the many contributions made by brothers and sisters of positively impacts their quality of life, kids with special needs) they also admit that being a primary n Family Caregiver Alliance caregiver comes with hurdles. n Strength for Caregiving (AARP-supported; primarily for seniors) “Many caregivers feel frustrated from time to time, and I can’t say it

30 QUEST / FALL 2015 EVERYTHING OLD IS NEW AGAIN

Caring for a sibling comes with it’s natural to slip into old roles. Instead, both siblings should a unique dynamic, explains They may assume labels long focus on the gift they’re giving MDA Health Care Service outgrown, like the “good” one, each other today. And if this Coordinator Marissa Lozano. the “troublemaker” or the “mi- feels like an insurmountable goal, “Adult siblings argue from time cro-manager.” That can pull old it may be time to seek profes- to time — just like they did 20 feelings to the surface, because, sional counseling. years ago in the sandbox. It’s a as Lozano explains, “You let “Everybody needs help from fact that has nothing to do with your guard down around family. time to time,” Lozano says. “It whether or not one sibling has a That can make the good times shows great strength when disability.” even better, but you’re also likely you seek help. After all, if you Many siblings experience to have feisty times, too.” don’t take care of yourself, you firsthand this “spirited” sib- There is no simple solution can’t take care of your sibling. If ling dynamic with every family to address the latter, although, you’re the one being cared for, Thanksgiving dinner or birthday as Lozano suggests, it helps to you risk losing so much shared gathering. Experts suggest that recognize these tendencies for happiness with someone who when adult siblings get together, what they are: yesterday’s news. loves you so much.”

enough: That’s OK, and it’s perfectly to earn compensation to supplement her sister will soon qualify for a day- natural,” explains MDA Health Care or replace other income when work- time nurse so she can return to work Service Coordinator Marissa Lozano, ing as a caregiver for a loved one. and continue caring for her sister who’s based near Philadelphia. “It’s Local MDA offices may be able to during evenings and weekends. important to have a support group, a help locate additional resources.) “Some days, I sit and make phone friend, a therapist or someone you can Ruhle, who is on family leave while call after phone call. It’s been a strug- talk to, and a safe place to vent.” caring full-time for Corosanite, hopes gle,” Ruhle admits, “But I’ve had a lot In Ruhle’s case, she attends an MDA support group led by Lozano. “It gives me a chance to express feelings that I can’t explain to anyone else. In the support group, everyone understands right away.” It is, Ruhle adds, like entering a room overflow- ing with camaraderie — but never sympathy, which Ruhle stresses she does not want or need. In addition to emotional hurdles, a sibling caring for a brother or sister with chronic or progressive conditions may hit financial obstacles. For Barash, who needed to quit his job to care for Angela, the solution was to become his sister’s paid caregiver. He reached out to LifeLong Advocacy, an organization created to help individuals with developmental disabilities. Sam attended classes through LifeLong Advocacy, and after earning certification as a qualified caregiver, he now cares for his sister and also Sharon Corosanite earns a salary. (In many states, poses with Medicaid and Medicaid-related state her daughter, programs offer options for individuals Lindsey.

QUEST.MDA.ORG / QUEST 31 her sister. Talking to her counselor, in + a safe place, defuses her anger, so she Family A CHANGING WORLD can compassionately talk to Liz. Caregivers “I tell her that I feel bad about not This November, According to a study conducted within the Department of Disability being able to help out more,” Sarah and Human Development at the University of Illinois at Chicago, an as we celebrate says, “and that I can see her frustra- National Family estimated 76 percent of individuals with developmental disabilities Caregivers Month, live at home with their parents. In 25 percent of these households, tion with all the work she has to do. it’s important to the caregiver is age 60 or older, and the average age of the adult It doesn’t change anything, but I do recognize these child with a disability is 38 years. think it helps when Liz knows how loved ones and It’s important to note that because “developmental disabilities” much I appreciate her.” the vital roles are a group of conditions due to an impairment in physical, learn- Lozano strongly agrees that seek- they play in the ing, language or behavior areas, this study covers a population far MDA community. broader than the MDA community. But its findings do shed light on ing outside, objective counseling can For more tips for help those in similar sibling-caregiver family caregivers, common family dynamics between caregivers and care recipients. read “Caring for That said, two other facts impact the historically traditional path relationships. the Caregivers” in whereby parents care for an adult child with disabilities: “It gives the individual a better n the Quest archives New therapies, emerging research and advances in medical perspective as to what the caregiver at quest.mda.org/ management are leading to longer lives for those diagnosed with is feeling, which can tighten the article/caring- neuromuscular diseases, which often extends that person’s need caregivers. for a caregiver. bond between the caregiver and that n Many parental caregivers are today hitting their 60s or 70s. So person,” Lozano notes. “That’s why we it won’t be long before these aging Baby Boomer parents will recently launched two support groups, be unable, or at least less able, to care for an adult child with a one for caregivers and one for the indi- disability. In fact, it’s possible today for many older adults with viduals living with a neuromuscular disabilities to outlive their parents. Combine these two realities, and the response is an upswing in diagnosis. For those in the latter who other family members, often siblings, assuming the role of primary are no longer able to speak, we offer caregiver for a loved one with a disability. support through an online community, since many of these individuals can share their thoughts by typing out of help from Sharon’s neurologist, ALS in 2012. Sarah lives in the San their feelings and frustrations.” and MDA and Marissa [Lozano], of Francisco area with Scarlett, her For both the caregivers in this course. She’s been wonderful.” 5-year old daughter; her husband, dynamic and their siblings, life at Rob Goulding; and the family’s new times may be frustrating, a struggle Care for caregivers puppy, Otto. Liz Coglianese, Sarah’s or simply a joy. So finding ways to Open, honest communication is also 32-year-old sister, lives around the cope and vent about challenges in a hot topic for Sarah Coglianese, corner with her husband and toddler a healthy way, and truly cherish the 36, who received a diagnosis of son. Even though Sarah has a daily good moments, is the key to main- assistant, Liz plays a major role in taining individual peace of mind and her sister’s care. a positive sibling relationship, they While Liz is there 100 percent for say. Aside from that worthy goal, For both the her sister — and Sarah knows this in there’s just one thing that tends to her heart — rough patches occasion- annoy Sam Barash. caregivers in this ally bubble up. “I sometimes feel “When I talk to anyone about my dynamic and their guilty, because I know this isn’t how choice to care for Angela, they always siblings, life at Liz and I expected things to play out,” end the conversation with the same Sarah explains. “I’m not mad at my thing. They say, ‘Good luck,’” he notes. times may be sister; I’m mad at the situation. I fear “But luck has nothing to do with my frustrating, a that she’ll get sick of taking care of choice. We make it through each day me. I know that is not true, but it’s a because we love each other. We’re struggle or pretty real feeling.” family.” simply a joy. The solution, Sarah adds, comes down to a few from-the-heart discus- Donna Shryer is a freelance writer in sions with her counselor and also with Chicago.

32 QUEST / FALL 2015 TRANSFORMATION, WITHIN REACH

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IMAGINE BEING IN A STRANGE CITY. You’re driving to the airport to catch a flight. Now suppose every street sign and traffic light you see is covered in paint. Which way do you turn? You look at your dashboard. All the indicators are covered in paint, too. Is the tank full or empty? Is the engine hot? Should you go faster? Slower? Or stop altogether? The truth is you simply don’t have the information you need to proceed isafely and get to your destination. That’s a little like trying to help kids and adults affected by neuromuscular diseases without the benefit of very important tools called biomarkers. Biomarkers — including measurements such as blood pressure, heart rate or the presence of particular proteins in the blood or urine — are biological indicators or measurements that tell us about someone’s health or the progression of a disease. Biomarkers can provide crucial information for researchers conducting clinical trials, helping them determine at the earliest possible point in the process whether a treatment is effective. As such, MDA is strongly committed to advancing research to find and utilize specialized biomarkers that will accelerate progress for the families MDA serves.

34 QUEST / FALL 2015 BY PHIL IVORY

biomarkersHOW IDENTIFYING THE BODY’S KEY SIGNS AND MEASUREMENTS SPURS LIFESAVING PROGRESS IN RESEARCH, CLINICAL TRIALS AND THERAPY DEVELOPMENT

QUEST.MDA.ORG / QUEST 35 “MDA’s research program places of life and comparing that to how several genes that can be used as + a strong strategic focus on the healthy infants develop,” says Kolb. muscle biomarkers for FSHD. To learn more about importance of identifying biomarkers “In addition to measuring motor “Genes that are either significantly all the new MDA research grants, linked to muscular dystrophy, ALS function, we are measuring poten- up- or downregulated in affected mus- check out MDA’s and related neuromuscular diseases,” tially useful biomarkers that may cles relative to control muscles could Grants at a Glance says Grace Pavlath, Ph.D., MDA accelerate and improve clinical trials serve as potential disease biomarkers,” slideshow at mda. org/gaag. And senior vice president and scientific in SMA.” Rahimov adds. ”Such biomarkers be sure to read program director. In August MDA Although the study focuses on tend to be more accurate and can be the “Strength in awarded four new grants, totaling infants, Kolb believes it may yield used to develop therapies and mon- Numbers” blog just over $1 million, to fund projects information applicable to older chil- itor the success of these therapies in post about the new grants by aimed at identifying biomarkers in dren and adults with SMA. preclinical and clinical trials.” MDA Senior VP and Duchenne muscular dystrophy “With our data, investigators who Scientific Program (DMD). If successful, this research are running and designing clinical tri- ALS Director Grace Pavlath. will lead to biomarkers that could als in infants with SMA may be able Michael Benatar, MBChB, M.S., DPhil, help track disease progression, to shorten the time it takes to deter- chief of the neuromuscular division increase clinical trial preparedness, mine if a therapy is really working or and professor of neurology at the lead to improved outcome measures not,” says Kolb. The study is expected University of Miami, Miller School of in clinical trials and facilitate trials to finish in spring 2016. Medicine, has received past funding that could accommodate nonambula- support from tory patients. Facioscapulohumeral muscular MDA for his dystrophy research seeking + Spinal muscular atrophy Research funded by MDA has shown biomarkers in ALS In 2014, MDA awarded Stephen J. that abnormal production of a protein ALS. His work Biomarkers Kolb, M.D., Ph.D., an assistant profes- called DUX4 is a major molecular focuses on For more on sor in the departments of neurology cause of facioscapulohumeral collecting critical this topic, and biological chemistry and phar- muscular dystrophy (FSHD). data from individ- enter “Looking for a Sign: macology at Ohio State University, a In 2011, MDA awarded a develop- uals who are at Biomarkers human clinical trial grant as supplement grant to Fedik Rahimov, Ph.D., risk for ALS due in ALS” in the mental funding for an NIH study a postdoctoral research fellow at to genetic factors search box on Fedik Rahimov is comparing infants with and without the program in genomics at Har- but who have not mda.org. working to identify spinal muscular atrophy (SMA). vard Medical School and Boston yet shown clinical biomarkers that may help speed therapy “We are studying how SMA pro- Children’s Hospital, to support his symptoms. The development in FSHD. gresses during the first two years work seeking to further illuminate ongoing study uses comprehensive the molecular mechanisms testing ranging from blood samples underlying FSHD. That to magnetic resonance imaging. included looking at destruc- Finding subjects for the study tion that occurs in FSHD who are at risk for ALS but not yet that may be due to activity of symptomatic required Benatar and other genes set in motion by colleagues to seek out individuals DUX4. with the familial (inherited) form “Genes that are induced of the disease. However, Benatar by DUX4 are those that believes his work will have implica- likely play a role in disease tions for the larger ALS population, initiation and progression in both those with the familial and FSHD,” says Rahimov. “These sporadic (noninherited) forms of the genes could serve as disease disease. He’s seeking biomarkers that biomarkers as well as targets can both predict disease onset and to develop new therapies.” monitor progression. Using muscle samples Benatar says: “We’ve been inter- collected from more than 20 ested in studying people before they families, the study identified develop the disease, to understand

36 QUEST / FALL 2015 such things as: When does that involves the need for more and better across the full spectrum of neuromus- disease begin? How does it unfold? biomarkers that can help make clini- cular diseases — and we appreciate + How does it progress? And are there cal trials more efficient and successful. that the FDA has invited the com- What’s a opportunities to intervene early?” As part of MDA’s national advo- munity to weigh in on this important Biomarker? “If we can figure out ways to identify cacy effort, and in response to an topic,” Stephenson continues. Learn the answer early disease or people at risk for FDA request posted in the Federal In addition to the four new MDA to this important question in the disease, I think that offers a really Register, MDA collaborated with the research grants aimed at discover- Quest archives at unique opportunity for early thera- Friedreich’s Ataxia Research Alliance ing biomarkers in DMD, promising quest.mda.org/ peutic intervention or even disease (FARA) and Cure SMA to provide research into biomarkers is also tak- article/whats- biomarker. prevention,” says Benatar, who also the FDA with a report on the current ing place in Friedreich’s ataxia (FA), co-directs the Kessenich Family state of research pertaining to bio- inclusion-body myositis (IBM) and MDA/ALS Center at the University markers in neuromuscular diseases. other diseases across the neuromus- of Miami. “The FDA appreciates that bio- cular disease spectrum. markers are critical and is seeking As MDA’s Pavlath notes: “Bio- Collaboration, commitment information about which biomarkers markers hold huge potential, from The FDA issued a report in June could be good candidates for vali- enabling earlier detection and better titled “Targeted Drug Development: dation, which we’re glad to provide,” treatment to streamlining the drug Why are Many Diseases Lagging says Kristin Stephenson, MDA vice discovery process so that lifesaving Behind?” which emphasized that, for president of policy and advocacy. therapies will be found more quickly many rare diseases, the molecular “We are deeply committed to work- for the families we serve.” and genetic underpinnings are not ing with government agencies and sufficiently understood to allow our friends at other nonprofit orga- Phil Ivory is MDA’s senior writer for effective therapeutic intervention. nizations to optimize awareness of the Communications and Marketing Part of this challenge, the report said, the crucial importance of biomarkers team.

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BY BETH HOWARD Invacare Gel Foam Mattress Overlay IT’S A CATCH-22: Getting a good night’s sleep is an clinic) in New York City. important way for people living with neuromuscular diseases People who stay in the to help maximize their health and well-being. But the physical same position also risk symptoms of many of these diseases can themselves limit the developing pressure sores. restfulness of sleep. “Sometimes patients are in a deep “We tend to overlook the importance of sleep; it’s so basic,” says sleep and don’t notice the pressure, and Sharon Greenberg, an occupational therapist in the MDA Clinic body parts can become numb when you at Seattle Children’s Hospital. “But getting good rest can be a real take away circulation for any length of time,” adds challenge for people with these diseases.” Greenberg. “Some patients don’t have a lot of padding on bony Immobilized joints tend to get achy and uncomfortable. And [areas], and the skin can break down pretty quickly.” although most people change positions or stretch frequently Improving sleep is usually a process of trial and error, often during sleep without even being aware of it, those with limited starting with low-tech aids, such as mattress overlays made mobility can’t easily move during the night to relieve the pain of convoluted foam, gel or air pockets that help to distribute and numbness that result from staying in the same spot hour pressure evenly during sleep to relieve pressure or make turning after hour. easier for those with some mobility. “There are some simple “It’s difficult for people with neuromuscular disease and difficult foam overlays from places like Bed, Bath and Beyond that can be for caregivers who have to get up frequently to help them change helpful,” says Greenberg. position,” says Jacqueline Montes, a physical therapist and The Invacare Gel Foam Mattress Overlay (invacare.com) is assistant professor of clinical rehabilitation and regenerative a step up in price ($545) and sophistication. Constructed of 24 medicine in neurology at Columbia University (site of an MDA horizontal “bladders” filled with a non-toxic gel, it’s secured on

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38 QUEST / FALL 2015 top of any mattress to prevent pain and pressure sores. Likewise, this tip: “You can adjust them to the firmest setting. That makes the Stimulite On Top Wellness Mattress Cover from Supracor it easier for people who can roll to move into a comfortable (supracor.com) is made of a unique bioengineered “honeycomb” position for sleep. Then they can adjust the bed to a softer setting material that distributes weight uniformly across the surface. for sleep.” The unit’s cellular matrix consists of alternating thick- and thin- On the upper end of the scale, the Neuropedic Electric Adjust- walled cells that flex when compressed to relieve pressure. Prices able Bed (neuropedic.com) offers easy adjustment of head and range from $1,400 to $2,000. foot positions with the touch of a button. It enhances circulation For those with greater mobility limitations, there are the Volk- and reduces tension in sore muscles with a gentle vibration ner Turning System mattress overlays from James Consolidated system. The Neuropedic CC 2000 Series Sleep Set pressure (volkner.com). The units sport a double row of air cells divided reduction mattress, made of a special foam that reduces the like- in the middle to provide relief from pressure along the central lihood of pressure sores, completes the setup. axis of the body. Air pumped automatically through hoses If price is a concern, comfortable air mattresses and beds can alternately inflates and deflates the two sides, turning the sleeper sometimes be found in community-based equipment assistance every four to six minutes. programs, such as MDA’s equipment inventory program, or at Other options come from the wider consumer market. “A local resale stores. Coverage through Medicare, Medicaid and portion of our patients like Tempur-Pedic beds,” says Montes. some forms of private insurance require that medical necessity The memory-foam mattresses (tempurpedic.com), which range be well-documented. from $1,700 to $7,500 in price, are designed to reduce pressure Unfortunately, Medicare doesn’t usually cover the costs of points. Adding the company’s Tempur-Ergo Adjustable Base beds that help pressure ulcers unless a user already has two ($1,400–$4,900) lets users or their caregivers select from an active stage wounds. If you can get a doctor’s prescription, how- infinite number of rest positions using a wireless remote. ever, in many cases taxes can be waived. Says Glazener, “Every “A lot of folks are going to Sleep Number beds,” (sleepnumber. little bit helps.” com), adds Pam G. Glazener, a senior occupational therapist at the MDA/ALS Center at Houston Methodist Hospital. She offers Beth Howard is a freelance writer in Charlotte, N.C. access MDA NEWS AND UPDATES FROM THE MDA COMMUNITY

Bryce Madsen’s Team Bryce at the 2015 Twin Cities Muscle Walk. Why I Walk

There isn’t a day that goes by where Bryce doesn’t “apologize for ‘being the way he is’ or for having to ask for help. As a mother, it simply breaks my heart that Bryce feels this way, and there isn’t much I can do to help him feel better, nor [do I] have a good answer to his questions. But I can be fierce and try to raise as much money as possible so he can go to MDA Summer Camp, where for six days these questions never enter his mind. And I can be relentless and raise as much money as possible to get a step closer to finding a treatment and maybe even a cure for this devastating disease. —Kelly Madsen, mother of Bryce, who This year, approximately 150 Muscle Walk events will take place was diagnosed” with spinal muscular atrophy (SMA) + across the country, featuring more than 12,000 teams and 40,000 registered participants coming together to walk and raise money for at 15 months. MDA. To get involved in a Muscle Walk for 2016, visit mdamusclewalk.org.

Members of Kappa Alpha Order support the MDA Muscle Walk. Chairman Luke Christie is an alumnus of the chapter at Furman College in South Carolina. “This partnership is really important,” says Tracey Gianelli, MDA national vice president of organizational partnerships. “One of the things we’re proudest of is it’s a group of young guys, a fraternity, that has stuck with MDA and supported us. We’re fortunate to have them as partners for so long, and it helps us because we know we’ll have ongoing support from them. It’s not just this year [that they’re fundraising for us], but they support MDA year after year.”

MDA is proud to work with + incredible partners and local Brotherly Love Walk, Pin-Up programs like MDA Sham- businesses to build stronger communities National fraternity Kappa Alpha Order rocks, letter-writing campaigns and other and uncover urgent answers for families celebrates 40 years as an MDA partner special fundraisers they host. The frater- who are desperately counting on us. To nity also has a personal connection to meet MDA’s Partners in Progress, visit Since 1975, the Kappa Alpha Order frater- the cause, as former MDA National Youth mda.org/partners-in-progress. nity has partnered with MDA as a national sponsor to raise funds and awareness for muscular dystrophy and related diseases Kappa Alpha Order is proud of its 40-year partnership with MDA. Service to our that limit muscle strength and mobility. “communities is one of our core values, and we know that giving back is a signifi- Kappa Alpha has raised more than $2.7 cant component of a man’s development in college. This relationship provides each million for MDA and participated in a wide of our 129 chapters across the country a unique, yet common support focus, in a range of MDA events, including Muscle national philanthropy.” — Larry Stanton Wiese, Executive Director

40 QUEST / FALL 2015 NEWS AND UPDATES FROM THE MDA COMMUNITY access MDA

A Math Champ Ben Lou earns a gold medal in the World Math Team Championship without a pen or paper

For Ben Lou, who received a diagnosis of spinal muscular atrophy (SMA) around his first birthday, going to China and speaking in front of 1,000 of his peers at the fifth annual World Math Team Cham- pionship last fall didn’t really make him nervous. It was the math competition itself that he was worried about. “[The speech] wasn’t as nerve-wracking [as the competition],” says Lou, 12, who lives with his mother, Jenny Huang, in Southern California. “I had just come back OF ZEENA GREGG PHOTOGRAPHY PHOTO COURTESY from the Great Wall and took a two-hour becoming a member of the U.S. Junior insurmountable problem for him. nap, so I had to be dragged awake to Team for the World Math Team Cham- “I guess I just have more practice than make it in time to the ceremony [where pionship in Beijing, which was held in most people, and some talent,” Lou says I gave the speech]. My voice was a little November 2014. humbly when asked how he does complex croaky and I wasn’t very loud, but luckily it Putting Lou on the roster ended up math in his head. “Because I can’t really was translated into Chinese by someone being a smart decision, as he was the only write, I’m forced to do it in my head, and with a louder voice.” member of the American team to receive that’s how I got good at it.” Lou spoke to the crowd about his life a gold medal, and individually he scored Since November, Lou has participated and family in California, and about those 13th out of a total of 271 competitors. in other math competitions, one of which living with SMA in China, to help bring While most would be ecstatic with those was the Math Kangaroo International more public attention to the disease and results, Lou actually felt he could have Competition in March, where he had a the need for better educational rights for done better. perfect score. He was also one of very few sixth-graders asked to attend the 40th annual American Regions Math- ematics League Competition at the “I guess I just have more practice [at mental University of Nevada, Las Vegas in May, where he was a part of the San math] than most people, and some talent. Diego team. But math isn’t the only thing that Lou Because I can’t really write, I’m forced to do it in enjoys. He has a wide range of interests my head, and that’s how I got good at it.” — Ben Lou that includes writing fiction and poetry, watching sports (particularly tennis), learning about science and the universe, and eating and observing the fresh fruits people in China living with a disability. “I made a stupid error where I only and vegetables that Lou and his mom According to a 2013 Human Rights Watch wrote one answer when there were two,” grow in their yard. As far as the future is report, more than 25 percent of children he says. “If I hadn’t made that error, I concerned, along with competing in more with disabilities in China do not receive might have gone way higher.” math events, Lou is interested in getting even a basic education. Lou’s success is even more impressive involved in science and inventing. Lou received this opportunity by catch- when you consider that he does all of this “I have several ideas,” he says. “My ing the eye of a recruiter after scoring in math in his head. Because of his SMA, most recent idea is a wind-powered car. the top 2 percent of competitors in the he can’t work problems out on paper the Everyone’s thinking about solar-powered American Mathematic Competition 10, way the vast majority of his peers can. cars, but I don’t know why no one thought at just age 10. This eventually led to Lou However, that clearly hasn’t been an of wind-powered cars.”

QUEST.MDA.ORG / QUEST 41 access MDA NEWS AND UPDATES FROM THE MDA COMMUNITY

When [Rush] was “being eulogized, I was astounded. Someone mentioned there is a [goal-setting] program he was working on called ‘GO FAR,’ and that hit me like a lightning bolt. That began the journey of making this documentary. — Zack Arnold ”

Going the Distance producer I’ve ever worked with and he way. Eventually, he was able to pull all of A Hollywood film editor creates has a great sense of humor, and since the pieces together, even securing Mark an inspiring documentary about his then we were personal friends.” Hamill as the narrator of the film — a friend and former MDA National While Arnold and Rush’s friendship con- fitting role because Rush was a huge Goodwill Ambassador tinued past college — the last time Arnold “Star Wars” fan and loved the idea of The saw Rush was at Arnold’s wedding, where Force. Hamill not only donated his fee on When Zack Arnold, Rush was a groomsman — Arnold didn’t the film back to the project after hearing a film editor currently realize how much Rush had accomplished about its inspirational backstory, but working on season throughout his life until he heard people he also helped Arnold get the rights to two of the hit FOX talking about Rush at his funeral. use footage from “Star Wars” in the film, TV series “Empire,” “I knew very little about what is in the film which many people told him would be attended his friend when he was alive,” says Arnold. “When impossible to do. Zack Arnold Chris’s funeral in he was being eulogized, I was astounded. Now that the film is completed, Arnold 2007, he had no Someone mentioned there is a [goal-set- is enjoying sharing it and Rush’s message idea it would inspire him to create a doc- ting] program he was working on called with a wider audience. umentary. Arnold’s friend was Christopher ‘GO FAR,’ and that hit me like a lightning “Chris was someone who was really Rush, a former MDA National Goodwill bolt. That began the journey of making good at distilling things down, and he Ambassador. Diagnosed with muscular this documentary.” loved quotes,” says Arnold. “The film has dystrophy at seven months, doctors told So Arnold had his idea and his title, a lot of external quotes, but the one that Rush’s parents he would barely make it however the rest of the creation of the I really think synopsizes the film is from to age 2. Defying the odds, Rush lived to documentary, which is his directorial Chris: ‘Everyone has a disability.’ [His may age 30 and achieved many of his goals, debut, did not come as easily. have been more readily noticeable,] but such as learning to scuba dive, grad- “I can’t even begin to list [the chal- every person has some form of disability, uating from law school and spreading lenges],” says Arnold. “Nobody believed and he wanted to inspire people to realize positive messages about people living that without a movie studio or distribution they could overcome these disabilities and with disabilities. or money that you could tell the story achieve their goals. That’s where GO FAR Arnold first met Rush in a film produc- properly. But I really ended up using comes from.” tion course at the University of Michigan. [Rush’s] GO FAR program where you take “Other students were saying ‘I hope your ultimate goal and break it down into For more information about the film, he’s not in our group,’ and that made me small, achievable tasks.” + including how to host your own angry,” says Arnold. “So I approached him Doing this, Arnold put the documen- local screening, visit gofarmovie.com. and invited him to join our group, and that tary together in bits and pieces over the A portion of the proceeds from the film was easily the single most life-changing last seven and a half years, jumping over will go toward funding a scholarship in decision I’ve ever made. He’s the best each new hurdle that came up along the Rush’s name.

42 QUEST / FALL 2015 NEWS AND UPDATES FROM THE MDA COMMUNITY access MDA

Do a Little Time, Do a Lot of Good Consider going behind bars to support MDA through a Lock-Up event Fighting the Flu MDA offers flu shot reimbursement In MDA Lock-Up events, local business and community leaders agree to be “arrested” and more for having big hearts. These do-gooder jailbirds then encourage their family members, friends, co-workers and neighbors to get involved and help raise “bail” money — which Flu season is approaching, and supports MDA’s lifesaving mission. for people with neuromuscular MDA Lock-Up offers participants disease, it’s particularly important Many Lock-Up a unique, playful way to rally com- to be prepared because influenza events allow munities to raise funds for people can be a serious and sometimes participants with neuromuscular diseases, help- life-threatening illness. However, be to meet MDA ing accelerate progress in research, sure to talk with your doctor before families. care and support for MDA families receiving the shot, as you would with in hometowns across America. any vaccine. If your current health coverage To get started, simply email doesn’t include the flu vaccine, MDA’s + [email protected] to Flu Shot Program will reimburse the express your interest, and an MDA cost of your flu shot up to $35. representative will respond and provide all the details you need to For more information about + the program and the flu in launch your own Lock-Up event and general, visit MDA’s Flu start fundraising. For more details, Season Resource Center at mda.org/ visit mda.org/lockup. flu-season-support. access MDA NEWS AND UPDATES FROM THE MDA COMMUNITY

Wish Granted The Albaugh’s Make-A-Wish MDA family goes on a Hawaiian Hawaii trip included siteseeing adventure, thanks to Make-A-Wish at a volcano.

When 9-year-old James Albaugh, who lives with Duchenne muscular dystrophy (DMD), first learned about volcanoes in school, he was fascinated by the idea of these lava-spewing mountains. While he enjoyed learning more about volcanoes online, James longed to see one up close and in person.

“One thing I want to point out is how amazing everyone was to us when they found out we were part of Make-A-Wish. They accommodated us in every way possible.” — Jamie Albaugh, James’ mom

And recently, Make-A-Wish granted that very wish, making it possible for James and his family to travel from California to For many, even Hawaii. The Hawaii trip, attended by the entire Albaugh family — James’ mom and dad turning this page and three siblings, one of whom, 5-year- old Jayden, also has DMD — included, of course, a chance to see volcanoes. But is a breakthrough. the family also enjoyed snorkeling, a heli- copter ride for better volcano viewing and the water slides and pool at their resort. The trip marked another exciting adventure in James’ summer, as he also attended MDA Summer Camp, where archery, the talent show and meeting members of the MLS’ Los Angeles Galaxy We’re here to make these were some of his favorite activities. moments happen. Read an extended version of + this story at quest.mda.org. For information about Make-A-Wish referrals, To learn more about how Talem Technologies consult your MDA clinic team and visit and the X-Ar™ is bringing endurance, stability wish.org/refer-a-child, or wish.org/local- and enhanced movement to the lives of chapters to find your local chapter. those with Muscular Dystrophy contact us at 313.748.7534 or visit TalemTech.com. access MDA NEWS AND UPDATES FROM THE MDA COMMUNITY

that advice to heart than $25,000 before departing for the An avid cyclist recently and began prepping diagnosed with ALS, more than 3,000-mile bike ride from San Ray Spooner is biking for a coast-to-coast Diego to St. Augustine, Fla., this October. across the country to bike ride. “I’m a “MDA supporters can turn their every- raise money for MDA. nutcase for cycling,” day activities into a fundraiser with Your he says. “I’ve been Way for MDA,” notes Natalie Stamer, assured by most MDA’s national vice president of online people that riding fundraising. “No one is restricted by 100 miles before organization-led events, but instead, sup- lunch isn’t normal porters can use their imagination and raise human behavior.” money to help find a cure for people with Spooner decided neuromuscular diseases.” to use MDA’s new Your Way for MDA Making His Way program to raise money through his ride Do you have a great idea for a Ray Spooner raises money for MDA with to help support MDA’s efforts to find + fundraiser? To find out how you a cross-country bike ride treatments and cures. Your Way for MDA can launch your own Your Way for MDA gives MDA community members the fundraiser, visit When Ray Spooner, a certified nurse-mid- ability to set up their own special fundrais- mda.donordrive. wife from Urbana, Ill., visited with his ing projects online and solicit donations com. Find Ray neurologist in January to discuss his through social media and email, as well Spooner’s recent ALS (amyotrophic lateral scle- as in-person requests. Spooner and his campaign rosis) diagnosis, the doctor suggested family and friends, some of whom will be by searching it may be time for him to start checking making the journey with him, either riding “Spooner” on things off of his bucket list. Spooner took along or providing support, raised more the site. NEWS AND UPDATES FROM THE MDA COMMUNITY access MDA

Upcoming Six years ago, I lost Team Momentum “my brother, Kyle, to Events Duchenne muscular Metro PCS Dallas dystrophy. He was Marathon and one of the most Half-Marathon Dec. 11, 2015 amazing people I have ever known, and Boston Marathon April 18, 2016 he is my motivation. Despite his disability, Colfax Half & Full Marathon he had a joyful spirit May 15, 2016 and an attitude of

Michelob Ultra determination. When Chicago Spring 13.1 I grow tired during Emily Garcia (right) and Team Momentum members at the 2014 Chicago Marathon. May 22, 2016 training, his memory keeps me going. I run for those who can’t — to bring hope Boston’s Run and joy to those with muscle disease. Being a part of Team Momentum feels To Remember right. The opportunity to train alongside my teammates who are also running for May 29, 2016 a cause so close to my heart has been amazing, and I feel so honored to be a part To join or support of this incredible team. + MDA Team ” Momentum, visit — Emily Garcia, Team Momentum member running in the 2015 Chicago Marathon

mdateam.org. (also ran in 2014 Chicago T:7.375”Marathon)

NO-COST GENETIC TESTING FOR LGMD*

MDA is proud to offer no-cost genetic testing for up to 31 separate neuromuscular disorders.

The test is non-invasive and only requires a saliva sample. T:5”

For more information, please contact your local MDA Health Care Service Coordinator (HCSC) or visit www.mda.org.

*Limb-girdle muscular dystrophy. Sponsored in part through a grant from Genzyme Corporation, a Sanoﬁ company.

Bleed Trim 7.375” W x 5” H GZUS.PD.15.03.0799_00666_QuestAd_190358_1v1 Safety Modiﬁed: May 20, 2015 5:30 PM access MDA NEWS AND UPDATES FROM THE MDA COMMUNITY

son’s] graduation from high school,” says Rob Curry Curry. “We thought it would be great to (right), an partner with a group, and MDA came to owner-operator of 19 Jiffy mind because of Jiffy Lube and the mus- Lubes, climbed cle connection. It goes hand-in-hand.” Mt. Kiliman- Even though Curry and his son are jaro with his son, Bobby, both Eagle Scouts, they still took training as an MDA for the climb very seriously. fundraiser. “I lost 20 to 25 pounds, and I was training almost every single day in the last six months,” Curry says. “At Jiffy Lube, we do a lot of goal-setting, and I took this on as if I was going to do another project at work. Every month I would sit down and see [where I was physically], and if I didn’t make my goals, I knew I would have to reset the future goals.” Conquering Kilimanjaro campaign. Recently however, he made Curry attributed their success on the A Jiffy Lube owner/operator and his son his MDA connection more personal. He hike, which culminated in them placing an make the climb to raise awareness, funds and his son, Bobby, decided to challenge MDA flag at the summit of Mount Kiliman- to help fight neuromuscular disease themselves to hike Mount Kilimanjaro in jaro on July 10, to this planning. And while Tanzania — which at over 19,000 feet is placing the flag and raising over $6,000 Rob Curry, owner and operator of 19 Jiffy the highest mountain in Africa — as for MDA — their goal was one dollar for Lube locations throughout Southern Cali- a fundraiser for MDA. every meter of Kilimanjaro’s 5,985 meter fornia, has long been a supporter of MDA “We had been thinking about doing height — were certainly highlights of the MDA Questthrough Jan 2015 his business 6000Tilt_mm_346.qxd and the MUSCLE 12/5/2014 UP 8:55a long AM hike, Page and 1 it coordinated with [my hike, Curry also relished spending time with his son. “After a hike we’d get to camp and have dinner and have two or three hours to play NUPRODX CAN chess, hang out, talk and things like that,” MULTICHAIR Tub/Slider Systems SAVE YOU $1,000s MULTICHAIR 6000Tilt ALL NEW! With a MULTICHAIR 6000Tilt you can use your existing tub and save $1,000s in remodeling costs. Its Center-of-Mass design keeps the user’s weight centered through the entire tilt range, for a small footprint. Log on to www.nuprodx.com to see the entire range of shower and commode systems that will improve the quality of life for users and caregivers alike. It’s the one system that can last a lifetime!

Features Include: • Center of Mass Tilt-in-Space controlled by a side-mounted hand crank for easy care-giver or user adjustment of tilt angle • Eliminate bathroom transfers with an he recalls. “At home, he’s a senior in high effective alternative when installing a school; there’s a lot of stress of applying to roll-in shower isn’t possible or affordable college and playing sports, but on the hike • Fold-back padded locking arm rests / we just had one goal: finishing the hike.” adjustable swing-away footrests • 5" casters with Total-Lock brakes • Seat height adjusts to the highest toi- Learn more about Jiffy Lube’s lets required by the ADA + MUSCLE UP for MDA program at • Removable locking bridge section jiffylube.com/mda. www.nuprodx.com • Won't rust or corrode: Aluminum, brass, stainless steel and plastic con- (855) 220-5171 struction—it’s going to last! QUEST showcase

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For more quality products visit us online at: Call 800-831-8580 www.adaptationsbyadrian.com www.mountnmover.com for a FREE demo video 888-724-7002 www.stand-aid.com • [email protected] from where i sit BY JACQUELINE MARIE JOHNSON Overcoming the Unknown Sometimes conquering fear of the uncertain and finding a world of possibilities is just a train ride away

The author explores downtown Chicago after taking a commuter rail line into the city.

HAVE YOU EVER FELT TRAPPED, isolated or suffo- For years, I had been deeply yearning to try the Metra train cated by transportation-related issues? I’m sure those of you who system, the Chicago metro area’s commuter railroad, but I was use a wheelchair, like I do — I have spinal muscular atrophy — or too afraid. I knew from experience that northern Virginia’s rely on some other form of mobility aid have felt these things a equivalent Metro train was somewhat accessible, but I recalled time or two. I know I have. But in the past couple of years, I’ve that you had to cross a gap between the platform and the train to been determined to face my greatest fear, which includes trans- ride. This gap was only about 3 to 5 inches wide, and my previous portation and so much more: risk-taking. power wheelchairs had big wheels in the front and back, so this I love reliability and dependability. I do things I know I can do, and I try things that I’m at least 95 percent certain I will be able to do. But the things I’m really unsure of can take me months, or even years, to work up the courage to do. For me, certain forms of I love reliability and dependability. I do travel always held this level of especially scary uncertainty. My parents and I moved to Illinois in 1999 after I graduated things I know I can do, and I try things from George Mason University in Fairfax, Va. Northern Virginia that I’m at least 95 percent certain I will is a pretty wheelchair-accessible place. They have taxis, trains and buses specifically for wheelchair users. Interestingly, when be able to do. I moved to Illinois, the unknown created an internal fear that things wouldn’t be as accessible. And frankly, at that time, the level of accessibility in Chicago and its surrounding suburbs wasn’t as comprehensive as it is now. At the same time, I was was never an issue. However, my more recent wheelchairs, includ- really excited and felt very privileged when I received my driver’s ing my current one, have smaller wheels, which made me nervous license and my first modified minivan in 2001. However, the den- about getting caught in a gap like this. In fact, I had such an sity of downtown Chicago traffic and the expense of paying for intense fear of this happening that I refused to even go to a Metra accessible parking were too much for me. I’ve never acquired the train station here in Illinois to see if that’s how its system worked. confidence to drive in that kind of traffic, and I’m unwilling to pay Can you imagine getting your tires stuck in this gap? I’d have

such outrageous prices for parking. nightmares of being run over by a train. It was frightening. OF JACQUELINE MARIE JOHNSON PHOTO COURTESY

50 QUEST / FALL 2015 Let’s jump to July 2015. A good friend of mine lives in Chicago. for tickets; you either pay for one ahead He loves downtown and all the sites you can see. I confessed to of time or do so on the spot. + him that I secretly longed to ride the train and explore the city, Our destination that day, Union Sta- Transitions on and that for the last year I’ve been trying to work up the courage tion, had ramps and was very accessible. Transportation to just figure it out and go. “What’s stopping you?” he asked. I And that was it! I was in downtown Chi- On the MDA replied with a list of excuses that were wrapped around my fears. cago, which has crosswalks and cutout Transitions Center, Afterward, he visited Union Station in downtown Chicago and sidewalks on every corner. There also are bloggers, including Jacqueline Johnson, talked with the conductors about the process of traveling. He accessible buses with fairly convenient delve into topics even took pictures of the platform and a proposed walk we’d take schedules, as well as wheelchair taxis, related to life with from Union Station to the Art Institute. He also made a video but you do need to call ahead a day or a neuromuscular disease. From showing me parts of the journey. two to schedule that option. inspiring personal Not long after that, on July 12, I faced the uncertainties and It’s incredible all the things I can do journeys to practical conquered my fear. My friend’s support and encouragement now. I’ve come to realize that facing travel tips and more, find a story before and during the entire trip helped me see the limitless fear with a bit of love, support and that moves you at possibilities of the Metra train system. Of course, there is a encouragement from someone special transitions.mda.org/ process we have to take, and it’s best to know that process ahead can make all the difference in life. So my blogs. of time. advice to everyone reading this? Never Yes, there is a gap between the train and platforms at some let fear stand in your way of seeing the stations, but Metra trains are equipped with lifts that extend out possibilities that await you. Exploration increases enlightenment, of the train onto the platform. You simply ride onto the lift base, self-confidence and self-worth. So go for it — take the risk and and it brings you up to the entrance of the train car. You can enjoy the adventure today! either go left or right into the car of your choosing. There are even places for your wheelchair. However, there are no straps Jacqueline Johnson is a leading expert in holistic counseling, life to hold you down. For me, this didn’t really matter. I felt safe coaching and spiritual well-being. Her focus is on reconstructing and secure. There aren’t any seatbelts for the other riders either; self-related issues to bring about total and long-lasting changes. we’re all the same. A conductor walks through the cars asking For details, visit jacquelinemariejohnson.com.

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Financing Available lasting impression Swimming, S’mores A first-time MDA summer camper reminisces about his unforgettable and More experience

THE EXCITEMENT THAT SURROUNDS MDA Summer Camp is evident from the energy and smiling faces of the campers. That’s perhaps especially true of first-time campers. For 10-year-old Axel Vazquez-Solis of Pennsylvania, who was diagnosed with Ullrich congenital muscular dystrophy in 2009, that excitement lasted all week long as he enjoyed the many pleasures of camp life — swimming, singing, meeting new people, having a friendly food fight and even taking motorcycle sidecar rides. “I liked riding on the motorcycles,” Axel beams. “I like to feel the wind when I’m going fast!” Along with his mother, Yessenia Solis, and younger brother, Nicolas, who also has Ullrich congenital MD, Axel also partic- ipates in the MDA Muscle Walk to help raise money for MDA programs, including summer camp. This year, the family raised more than $2,000 for the Greater Philadelphia-area Muscle Walk. Still bubbling with excitement from this year’s summer camp, Axel is already thinking about going back next year. When asked what he is most looking forward to, Axel says that while every day To learn more about MDA Summer Camp, including an FAQ and activity was special, there is one thing that stands out. “The + for parents, visit mda.org/summer-camp. And if you or your child is a camp veteran, we’d love to hear your camp campfire and the s’mores,” he says. “[Sitting by the] campfire and stories; email us at [email protected]. roasting marshmallows was a lot of fun.”

52 QUEST / FALL 2015 Lambert-Eaton Myasthenic Syndrome (LEMS) or Congenital Myasthenic Syndrome (CMS) patients, ask your physician about an exciting investigational treatment BREAKTHROUGH THERAPY WITHIN REACH

This breakthrough investigational therapy is only available through the FIRDAPSE® Expanded Access Program (EAP)

Here are some benefits you can expect from the FIRDAPSE® EAP1: • Free access to the investigational treatment FIRDAPSE® (amifampridine) Tablets 10mg, which has shown positive results in the largest Phase 3 trial for the symptomatic treatment of LEMS • FIRDAPSE® is designated as a ”Breakthrough Therapy” by the FDA • Unique formulation doesn’t require refrigeration • The most common adverse events were oral and digital paresthesias (i.e. tingling), nausea, and headache

Find out more today: Speak to your doctor or call 1-844-FIRDAPSE (1-844-347-3277) toll free to get more information. Visit: CatalystPharma.com

Reference: 1. Data on file, Catalyst Pharmaceuticals, Inc. sponsored by FIRDAPSE® is an investigation drug and currently not commercially available in the United States. FIRDAPSE® is a registered trademark of Catalyst Pharmaceuticals, Inc.

© 2015 Catalyst Pharmaceuticals, Inc. CPP-15040C All Rights Reserved. Printed in the USA August 2015 Helping Families be Families. MV-1 is the only mobility vehicle built from the ground up for accessibility, comfort and safety. Unlike CNG is a factory- conversion minivans, the MV-1 has successfully completed a battery of installed option. specific FMVSS crash tests, making it the only mobility vehicle recognized by the National Automotive Dealers Association (NADA). Contact your local dealer to see why more families are switching to MV-1.

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